Hi there, I have just joined as everyone here seems very knowledgeable and I am at a loss to know what to do right now. I am vegan, and usually pretty healthy.
In December I went to my Dr as I was feeling very tired and run down, getting a series of minor infections and just not feeling myself. I was diagnosed with anaemia and Vitamin D deficiency and put on supplements for both.
Last week I went back to see a different Dr as my health has deteriorated further. I am constantly tired, achey, lethargic. I've gone from being able to run 5 miles comfortably to struggling to walk a few miles. I feel terrible. My Dr ran tests and the results came back as 'all normal, no action needed.' My Dr has told me to come off everything I am supplementing - which, as a vegan seems a little reckless!
I requested a copy of the results which show my B12 as 262 ng/L but my Folate level as being so high as to be off the charts (>20 ug/L). I have read that an excess of Folate can mask a deficiency of B12 - could that be the case for me? Even though there is a within-range figure for B12 on my blood results?
My Dr has basically told me there is nothing more to be done for me and I am desperate. I was healthy and fit just a few weeks ago and I feel completely helpless in this new, compromised state. Clearly my Dr is going to be no help but I need to get my health back on track. Any advice greatly appreciated, thank you
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whatsername
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Hi there, thank you for responding so fast. Yes, it included a whole bunch of things, she said my thyroid tests were normal - not sure which is relevant, so I will post them all and hopefully you can pick out the relevant ones!
Serum Ferritin 25 ug/L
B12 262 ng/L
Serum Folate >20 ug/L
Serum TSH level 2.04 mIU/L
WBCs 5.7 10^9/L
RBCs 4.20 10^12/L (this is slightly out of the range of 4.32-5.6)
HB 132 g/l
Haematocrit 0.406 l/L
MCV 96 fL
MCH 31.3 pg
MCHC 325 g/l
RBC distribution width 13.8%
Platelet count 160 10^9/L
Neutrophil count 3.2 10^9/L
Lymphocyte count 1.8 10^9/L
Monocyte count 0.4 10^9/L
Eos. 0.0 10^9/l 0.2 10^9/L
Baso. 0.0 10^9/L 0.0 10^9/L
I thought I was pretty well informed about this kind of stuff but I am clueless right now!
Do you have the ranges for those tests? As a general rule, you aren't looking for a result to be "in range", you are looking for it to be well in range. I'd say your ferritin is too low, but can't be sure without knowing the range. You need to have your iron level tested too, with ranges. Also ask for Vit B12, Vit D and folate to be tested.
You haven't had a proper set of thyroid tests. Go back to your doctor and ask for thyroid antibodies, FT4 and FT3 (with ranges). S/he will probably try to refuse to test FT3 as the labs are reluctant to do it. Insist that it is done. If you meet with total refusal you can order the test from Genova UK or Blue Horizon. T3 is the active hormone that the body uses and FT3 is the vital test which tells you whether you are hypo. Measuring TSH if you are not on meds, just tells you how well your pituitary is working. You might, for example, have secondary hypothyroidism which means your pituitary cannot stimulate your thyroid effectively.
Finally, consider if you might have adrenal problems too. There is a good questionnaire here adrenalfatigue.org/take-the...
I had requested my previous blood test results, but they have only supplied me with these, the latest, ones. Iron was low in December and I don't believe it's been retested. They tested Vitamin D in December and said it was too low. They retested a month or two ago at which point I was told it was improving but to keep going with it. When I questioned her this time she said "stop everything"
Thank you for the advice, I will go back and ask for more tests with hopefully one of the more sympathetic GPs! I have just done the test on the website and it indicates that I could possibly have adrenal issues too. Thank you so much for taking the time to respond. I don't feel so helpless now I know what I am asking for!
You've taken the first step by asking here. Be aware that your doctor will try to deny that you have thyroid problems and won't have a clue about adrenal issues. However we are here to advise you on who to see and how to get the correct treatment. If you can afford to see a doctor privately, PM me and I'll send you details of the 2 I've seen.
Use your doctor as much as possible and try to get them to engage and do the tests you are entitled to and prescribe any treatment you are entitled to.
I have to say the Drs at my surgery are almost completely useless. I have hesitated to move practices as I am about to move house and will be changing at that stage anyway.
I will definitely keep pushing but I needed to know what I was asking for, so all this information has been great!
Hi can I plead ask what the outcome was for you I see this is an old thread,my B12 is at 282 and I felt dreadful but my folate was good at 19 I’m feeling so unwell and waiting for thyroid panels to be done,I will be self injecting b12 also as I had the loading doses done and felt much better but have declined again😢 x
First of all are you on any other medicine not vitamins ? please dont worry i have been there the worst thing you can do is worry. b12 tablets help me 1,000 one a day my b12 was 363 the told me normal i have got it up to 653 and feel so much better i felt like you are feeling ,i also take vitamin d3 with calcium as my vitamin d level was low at 17 they wanted it above 25 ,i also take opti -omega 3 capsules as i dont eat fish ,as from 2011 feeling like i would end up in a wheelchair i have progressively got better each month and nearly feel 100%
Hi Suki, thank you, that's great to hear how much you have improved, and really encouraging
The only other medication I take is the (mini) pill, which I started last month, and suspect has perhaps complicated things further (without boring you with my whole medical history I had a 3 day course of fertility drugs in February with the intention to donate eggs, but it upset my health so dramatically in that short period that I came off them - the upset they have caused my system is still having consequences though, hence the pill!)
Otherwise, no, I try and avoid conventional medicine wherever possible. I have been supplementing with Vitamin D, B complex, Iron and multi-vitamins, and others intermittently, but no other drugs.
I think you need to see a different GP at your practice or change GP surgery. The one you saw patently does not understand the importance of nutritional deficiency. Did the GP retest your vitamin D and ferritin before telling you to stop supplementing?
Your symptoms are entirely consistent with nutritional deficiency. Iodine supplementation may boost your thyroid health too.
Vitamin D needs to be in the optimal range of 75-200, ideally high up the range. A loading dose should be prescribed for deficiency <20. I was prescribed 40,000iu daily x 7 followed by 2,000iu daily for 8 weeks to lift my vitD from <10 to 116. My sister is prescribed 20,000iu twice weekly to lift her vitD from 45. You might show your GP the new guidelines published in April. As you are vegan I feel sure you are likely to be in the 'at risk group'.
K2, magnesium and zinc are synergistic with vitD and help keep things balanced.
Ferritin should be 70-90. Take each dose of iron with 500mg-1,000mg vitamin C to aid absorption and mitigate constipation.
Your B12 is very low and neuropathy can be experienced when <500. Vegans need to supplement as they don't get B12 from meat and fish and it isn't available in plant foods.
No, she didn't check my Vitamin D. Last time it was tested a month or two ago I was told it was improving but needed to continue supplementing, but she was adamant that I needed to stop everything. I have been on a dose of 2,000iu since December. Thank you for all this information. It helps hugely. I will definitely see if I can go back and see a more sympathetic GP. She seemed really decent the first time but the second time she just pretty much washed her hands of me "just go away and build up your exercise slowly" - I wish I could!!!
Whatsername, you need a more competent GP not a more sympathetic one. You should ask for a follow up vitD test to see whether your levels have improved after 6 months supplementing and also another ferritin test to see whether your anaemia is responding to iron.
Your MCV is also HIGH and that will indicate problems with deficiency. I have only recently learnt that from hampster1 who is very wise about B12 Deficiency and PA. There is a book you can download - Pernicious Anaemia The forgotten Illness - and B12 Deficiency by Martyn Hooper - a sufferer.
There is so much more to it than the test you have had. The last website posted by Clutter will explain the additional testing you will need - like MMA and Homocysteine.
You will also read on the website about the Japanese range starting at 500-1300 and that only 20% of your B12 result is available at the cellular level where it is needed.
Take the list of tests required from the website and inform your GP what is needed.
Click onto Members on the purple bar - then type in hampster1 and her posts will appear....
It is shocking to me that none of this is flagged up by the GP. I will take a look at the book you recommended. I have a list of blood tests to request and will call for an appointment in the morning.
I can't believe that the recommended ranges vary so much - the Japanese range is so dramatically different from ours. According to that I am most definitely deficient! Will check out Hampster1's posts, thank you
This is why belonging to a forum like this teaches you loads....so eventually we have the confidence to go it alone. No one will care for you better than YOU ! The NHS is rarely about preventative medicine - unless Big Pharma can make money - so we have to work it our for ourselves.
Getting everyone with good levels of good B12 could save millions - also VitD....
I am so much better than I was three years ago - however I still hang around - so I can keep learning and be updated by others who know more than me !
Only about 20% of your B12 blood result is available at the cellular level where it is needed - again this explained on the website about B12 deficiency. Hence the result must be at the TOP of the range.
There is also a video on You Tube about low B12 in Alzheimers and brain shrinkage....again when there was all the discussion in the UK last December about finding a cure for Dementia I did not read once about taking B12. Sally Pachlok states that older people need levels of 1000 to prevent cognitive decline - so spread the word....
I absolutely agree with you regarding the lack of money to be made from preventative medicine. I have always been somewhat cynical about allopathic medicine and preferred a more hollistic approach.
According to your link my symptoms point very strongly to a B12 deficiency- including the nerve pain I have had for months and never managed to find a cause for. I'm frustrated that my GP didn't flag this up months ago and frustrated that I have to spell out how they should be doing their job in order to get the answers I need.
Very interesting about the Alzheimers thing too - will definitely watch that. I have Alzheimers in the family (Grandparents and at least 2 of my aunts) and so think I am at high risk for that...definitely need to reduce my chances as far as possible!
Thank you for the information and support. I feel a lot more informed and empowered
......don't be cross with your GP - channel your energy into learning from the websites that have been suggested - and just keep reading and learning.
Functional Medicine is fast growing - in particular the States. They look at the whole body and of course take into consideration your family history. It's like solving crimes - the evidence does not always point to the solution !! Institute of Functional Medicine - there is a website - and maybe there is a Practitioner near you. If not just keep posting and asking questions - everyone is here to support you....
I know you think it is shocking that your GP was NOT aware - well very few are. I had my Terminal Ileum removed over 40 years ago with Ileo-caecal TB - and no doctor has ever mentioned I would need B12 injections for life. B12 is absorbed in the Terminal Ileum. Hence my experience to mention that you must take control of your own health..... Have just started injections - thanks to hampster1 - at the age of 67
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